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My son has a trach and heart defects. I am just wondering if there are any more moms here with kids that have trachs or used to have a trach.
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My kids have some other challenges, but I have a dear friend who is going to deliver a child with Hypoplastic Left Heart Syndrome this summer. There are alot of unknowns
Do you have any advice for her to prepare, nursery and that type of thing?
Hugs
What a group of cuties you have!
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First of all, where does your friend live? If she is in Michigan with you, then tell her to RUN to Dr. Bove, who pioneered the surgeries her baby will need at birth. My son's pediatric cardiologist studied under Dr. Bove during his Fellowship. Next, join a support group. I know of several, the best one being TCHIN. The Congenital Heart Information Network at . Tell her she can call me. If you pm me I will give my number. She is coming into a new world and is going to need all the help she can get. HLHS kids are about the sickest heart kids out there, and usually need surgery right at birth. Some need transplants. I know of several kids with transplants too. What kind of insurance does she have? Make sure she fights with every bone in her body with them for the Synagis shots in October to protect from RSV. The more she learns going into this, the less of a shock it can be. It still hurts, and there are many variables, but the more I learn, the better I am. I am right there with her. My son still needs 2 more surgeries. The next one probably this summer. I could go on all day. You will have to PM me, because your info is set to private and I cannot send you my email address.
As far as the nursery, Don't buy too much right now. Some babies take a few weeks to recover, some take longer. She needs to know if she will be close enough to drive to the hospital daily or will she need the Ronald McDonald house. If she needs RMH, she needs to make reservations asap. If I knew her town, I could find out if there is a heart family in the area that could give her some moral support, starting right now. I cannot stress the importance of support to a new heart family enough. Sorry this is so long. I have become somewhat of an advocate for heart families. I want to give them the things I didnt have when Tommy was born.
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I baby-sit my best friends dd who used to have a trach. Luckily she was able to have it taken out last October, right before she turned 4. It has been a long road, but she is doing great now! She is just still really little. You can pm me anytime if you want to talk. BTW, your kids are adorable.
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Hi Tommy's Mommy! Your situation sounds similar to one I was in about 3 years ago. My dd Lily is a twin, and she was born 6-1/2 weeks early with a VSD (hole in the heart) and a Coarctation of the aorta (narrowing in the aorta, inhibiting blood flow to the lower part of her body), as well as some minor valve issues and a semi-membraneous flap over her aortic valve that they are still watching. They surgically repaired her coarct, and the VSD closed on its own by the time she was about 2. She also had something called esophageal atresia, where her esophagus wasn't connected to her stomach, tracheomalacia (soft cartilage in the airway, making it collapsible), and malrotation of the small intestine (to give you a visual, her appendix was in the upper left quadrant of her abdomen instead of the lower right quadrant). She was hospitalized for 6 months before coming home with her trach and g-tube. It was a very looooong road, dealing with reflux, illnesses, etc. She was so susceptible to every little bug! We also had homecare nurses in our house at least 16 hours a day/7 days a week. Life was crazy!
Once Lily started weaning off her CPAP onto a trach nose, it was nice having her more portable. Plus, in the summer we could take her to the park or the zoo. (She dropped her trach nose in the seal pool once! ) She was decannulated in October of 05 after having an aortopexy to remove a lot of the scar tissue in her chest wall from her previous surgeries and relocate her aorta so it couldn't impinge her airway. We thought she might need to have an LTR also (laryngeal tracheal reconstruction), but the aortopexy did the trick for Lily.
She still has her g-tube, but I haven't had to put anything through it for a few months now. I think if I can get her to gain weight a little better, we'll be able to take that out later this spring. Lily's also still working on walking and she has some speech delays due to having the trach for so long. All-in-all, she's doing great though! We've been so blessed!
Her twin is perfect, and their big sister (5) is also doing great. It's tough on the siblings, but they get through it.
Long-term Lily has a good prognosis, and she'll grow up to live a relativlely normal life. She'll probably always get sicker easier and stay sicker longer than the average kid, and she'll also probably always have some degree of reflux, but those are all things we can manage.
Thank you for sharing your story, and welcome to the group! Feel free to pm me if you ever have any questions or want to talk further.
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Thanks, I'll PM you. I printed out your facts post too!
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I do not have any children of my own with a trach but I am a nurse that cares for special needs children who live at home. Many of the kids I have cared for have trachs. My current case is a 5yr old boy, I have been his primary nurse since he was 8 weeks old. I started taking care of him on night shift, I was there so that his mom and dad could sleep - now I work dayshift and go to school with him.